Update on the Finn-miester

Before I start my update I want to let you know that today we FINALLY celebrated Chinese New Year in our house. I took a few pictures of the kids in their outfits, which I put through out the post. (and we had yummy Chinese food for dinner today!)

On Tuesday I had a "non-IEP" (individualized education plan) IEP meeting for Finley. This doesn't make sense, you say? You would be correct. But it had to be done. See - Finley doesn't qualify for special education at our elementary school.

BUT - she does qualify for vision impaired services. In order for BESB to get her an orientation and movement specialist, and continue on their path of VI education, they needed the school to give their okay.

So. Much. Paperwork.

Anyway - this meeting only took about 30minutes, which wasn't bad. And it wouldn't have taken that long, but the principal at our elementary school is new, so she was curious about Finley. She knew of Arlington (hard not to with that unusual name). So she was intrigued to learn about our little firecracker since Arlington is such a "sweet girl". Yeah. Wait until she meets Finley.

The occupational therapist read from her report and wanted to make sure I didn't have any questions about what we were supposed to be working on (balance). Since the one occupational therapist at the school is a good friend of mine, I have it under control. The special education preschool teacher was curious about what BESB was doing with Finley. They all took notes about different accommodations Finley needs now. I can see that when it is time for Kindergarten they are going to be very helpful, but are going to need a lot of guidance. Thank goodness for BESB. They will make sure the school gets what Finley needs.

Afterwards, Gail (Finley's VI teacher) and I talked a bit more about her standing so close to the TV. She thought at this time I should just let it go. I told her my concern is that as she gets older how this probably won't be socially acceptable. But she assured me that Finley's true friends will realize that is what she needs, and they will accomodate her. She gave me a few more magnification devices and another little "set" (a play set with props and a book in print and braille - we have three now). She spoils Finley rotten.

This week - on Monday - we got an email from the Carver Lab in Iowa (the place that is running the DNA test on Finley to find out what gene of LCA she has) saying they think they have found something. I asked what it was, and they gently told me that they cannot give me priliminary results. The reason they were contacting us was because they needed blood from Mat and I to determine what they found. I wish I could explain it to you. Mat could write it out for me, but you would probably be as lost as I was. Basically - either what they found is LCA causing or it isn't. Mat's and my blood will prove one way or another.

My mother-in-law said that getting a bit of news like we did on Monday is like dangling a carrot just out of a bunny's reach. She is so right. We have waited 6 long months for results and we are very close now. But we have to get our blood to them in order for us to get our answer.

As most of you know.....we live in a small town. We got a lot of "uh - we can't do that" when we asked to get blood drawn and mailed to an academic lab. Don't get me wrong - everyone was very nice and racking their brains to find places for us to call. But every call was the same answer. Finally - after about 1 million phone calls (3 days worth) I found a place. Halle-flipping-lujah.

So today we had out blood drawn and sent off to Iowa for testing. From what I understand, it should be a few weeks to a month and we will know something. SOMETHING!!! It is almost too much to bear. We may FINALLY know what we are dealing with. It will give us a small glimpse into our future. So please pray that 1) the lab finds the gene of LCA in their research so that we know our daughter's official diagnosis 2) that if they find an LCA gene that is is a STABLE one and not a DEGENERATIVE one (yes it could be one or the other).

Wednesday Mat and Finley went to Boston to have her night blindness test. This is to, of course, find out how well she can see in the dark. I think it is officially called Dark Adaptive Threshold test. Something like that. She had to sit in a dark room for 30 minutes - completely dark. Mat was a good one to go on this trip because he made that a great game. Finley enjoyed recounting the "find daddy" game they were playing while they waited. Mat said a guy went behind a screen and shinned a light and that light got dimmer and dimmer. Finley's job was to find the light he was shining.


Mat said she got it right every time. So the end result was that she doesn't have any trouble seeing in the dark. That her eyes adjust to dark rooms and she can still see in dimly lit areas. We kind of already knew this. She doesn't see great with restaurant lighting, but she does okay - like if the crayons are dark enough. But this was good news.

They also did another eye exam on Finley and took more pictures of her retina. The Dr. believes that Finley's vision is about the same as it was last summer. She does not see any change. More good news. She also said the blackened areas of her retina have not gotten any worse either and the vessels in her eyes still looked great.

She has read the vision field report and after looking at that - and the pictures of her retina - decided that trying some glasses on Finley would be an good idea. I was happy to hear this because 1) Finley does have a bit of a refractory error with the vision she does have and 2) that means the damage isn't RIGHT where the light bounces off to correct such refractory errors.

But they tried the glasses at the end of the testing - about 4 hours after it started. Mat said she was beat, and the test came back that the glasses made her vision worse- not better. Dr. Fulton wasn't convinced this was entirely true, but left her alone for the time being. It could actually mean that glasses don't do a thing for Finley, but no necessarily.

So a good news appointment. I would be doing a disservice, though, if I didn't say that the doctor was a complete ego maniac this appointment and was not very kind to Mat. Mat, being the geneticist, always has questions about the genetic aspects of Finley's GENETIC eye disorder. Silly him. This doctor does not like to talk with people that might be of equal intelligence to herself. She doesn't want to be challenged. She just wanted to dumb down information and walk away. And say "here is your bill for $1200. See you in a year."

We are not that family.

So Mat did not leave there pleased with her attitude, and I was mad that the doctor treated him with disrespect. Above all I didn't feel that she felt our nervousness, and anxiety, and sadness about this whole thing. She didn't take the time to listen to his concerns and his questions. She blew him off.

So thankfully we won't have to see her again until next February. We will see Finley's pediatric opthalmologist in July, Perkins School of the blind for another vision field and magnification test in August. Finley will see BESB two times a month in between all of that. And we will go and visit a school of a child who is blind and see all of her equipment. And we will go to a conference at the Perkins School of the blind. And we will go to an LCA conference in Philadelphia. And we will start to prepare for next fall's vision walk in Pittsburgh.

I could go on forever.

We will be getting her results back soon, and so we will start to move forward.

And even with all of this - we still have to have a life. We are going to be planning a vacation this summer, and then a trip to Disney World next year. We have to finish this school year and get ready for the next. We need to play, and relax, and travel, and work.

It sometimes becomes all consuming thinking about Finley and all that comes with this diagnosis. Every day in the mail I get catalogs for the blind, visual aides for the blind, free matter for the blind, books for the blind. It is in my face. All. The. Time.

Because it is always in our face, it becomes a consuming pass time. To step away and realize that through all of this I have a husband, and three kids, and a house, and a full time job, and a son with his own needs - it is like a whole separate life.

I am hoping at some point it will slow down. Or change. Or become less of a focus. I am not sure what. I just wonder how long it is going to be until that happens. Next year? 10 years? Never? Hard to say.

The balance is what I need to work on. I think now that we won't have another eye appointment for 6 months (After we have had one every month for 6 months) will help a little.

That is the latest. I hope that in a few weeks I will have news about what LCA gene she has. And then, I feel like I might be able to breathe a little easier.

See you Monday for "making meals monday"!